Archive for the ‘disability’ Category

The Sundance Channel has a new reality series featuring a diverse cast of attractive women who use wheelchairs for mobility due to paralysis. The show is called “Push Girls” and it will be airing for the first time on June 4th. I’ve watched a number of interviews and previews online and I have to admit I’m skeptical that this will be a good thing for those of us who use wheelchairs as well.

It’s refreshing to hear of a positive portrayal of people with disabilities. It would be amazing if more of society would see the person and not the chair. It would be incredible if even only a handful of people considered the capabilities of the next person they met with a disability rather than dismissing them due to their preconceived notions of limitations. I’m just not sure the Hollywood-fashion-drenched-drama-induced reality-tv version is exactly what the community needs. Most of the press, while positively reviewing the show, has used negative stereotypes such as the term “wheelchair bound” (such as here, here, and here.) I certainly applaud the women featured, but I have to admit one of the first things I noticed was their expensive chairs… and then their clothes and then their cars… and then their homes. Most people with disabilities don’t live that way. Most people with disabilities don’t have the advantages indicated by the sneak peaks and reviews.

I don’t have cable so I’ll likely not see the show until it’s online and I know that it’s hard to judge a show from previews and interviews. Regardless, I hope the show occasionally shows the real reality and difficulties of life with a disability and not just relationship drama and corporate placements.

When I was in rehabilitation, the faculty would sew loops on my pants to make them easier to pull up and my insurance company bought me various sticks and hoops to help me dress. Nevertheless, I found getting dressed to be the worst part of the day – flopping around like a fish trying to get pants pulled up just to spend all day tugging a shirt down that won’t stop riding up. When I was discharged and back home, I often cried over my clothes. I remember one time I went to the bathroom and spent 45 minutes getting dressed and back into my chair just to have to go again! Shoes were also a problem. My feet swell significantly and normal shoes (even wide ones) caused blisters and sores. There are a lot of challenges to overcome in using a wheelchair but clothing is one of the worst.

I eventually abandoned the sticks, loops, hooks and shoes and went with whatever I could get on – usually this meant casual pull-up pants, tank tops, and thick socks. I’ve been through many rounds of buying and returning clothes from various stores since it’s impossible to try on anything in most fitting rooms. The only “fashion” I managed to find was rather unlikely – Victoria’s Secret makes “Sexy Tops” that also fit very well when seated. I assume this is just because Victoria’s Secret has perfected the art of cutting fabric to look good in any position; the tight stretch fabrics often keep cloth out of the way of my wheels but I’m hard on my clothes and unfortunately they only last about 50 washes before falling apart.

In my early days of using a wheelchair, I used to think about this a lot. I even have drawings in a notebook of clothes I thought I should go into business and design – including pants with longer legs and shirts with a little extra fabric in the back to compensate for pants that slide down when getting in and out of the car. Eventually, though, I resumed my regular life activities and forgot about those drawings; I just got used to all the drawbacks of trying to sit in clothes that were made to stand.

It’s been 8 years since the rehabilitation facility sewed loops on my pants rather than telling me there were clothes specifically designed for individuals who used wheelchairs… clothes I recently discovered.

I stumbled upon clothes for elderly individuals who use wheelchairs while looking for accessible shower solutions for our house; these were great and I ordered a few pairs of pants with zippers on the side! They are awesome. I can’t believe it took me 8 years to find something that would make dressing easier. The downside though is that someone younger has to hunt and peck for more “fashionable” styles among the inventory to avoid looking like they just rolled out of the local nursing home.

After about an hour of searching intensively online for other options, I have found a very limited selection of clothing designed for younger individuals who use wheelchairs. I’ve ordered a very small number of these too (very expensive!) and they should be here very soon. I’m really looking forward to trying them on.

In the end though I really have to wonder why I didn’t know about this earlier. Should I blame the therapists for not telling me? (They had to know, right?) Should I blame myself for not looking online? (I don’t know how I would have known what to look for?) Or, should I blame myself or being so attached from the atheist community (and consequently detached from the disabled community) that I am not actively aware of some of the ways disabled individuals live better. (I did have a very good friend once who was disabled from birth and she too would complain about clothes in the same way I have – implying that she was unaware as well.) Don’t get me wrong, it’s not a complete solution – getting dressed is still a pain in the ass – just ever so slightly less of one.

TAM 8 was held in the South Point Hotel and Casino. Prior to getting on the plane, I called to make a reservation for the shuttle. At that time, I was told that all of their shuttles (airport and mall) were accessible. I also spent a good deal of time online reading about how Las Vegas (casinos) have “treated the disabled as first class citizens even before the ADA” so I was looking forward to getting out and enjoying the city. At the airport the shuttle was marvelous and the driver was friendly…little did I know, the next time things would be so accessible would be when I boarded the shuttle to return to the airport. In the past seven years I have used a wheelchair, I’ve stayed in a number of hotels; South Point was, by far, the least accessible.

When I checked in, I was asked if I wanted a shower or bathtub… bathtub please! You have a tub bench, right? Wrong. The front desk called housekeeping and subsequently told me they did not have benches left. I asked when they anticipated having one as I was willing to go a night without a bath. She didn’t know so in the end I took the room with the shower. Logically, why would a hotel not have a shower bench for every accessible tub? No, I don’t mean every bathroom but simply every accessible bathroom. It just makes sense and not doing so would be a bit like not having enough sheets for all the beds! At the very least they could have kept track of which rooms their benches were in and how long the corresponding guests were staying. (I’ll come back to what happened when I tried to use the shower.)

The largest issue was the floor throughout the hotel. Keep in mind, the hotel was huge (2,200 rooms) and it was often a bit of a distance from A to B. Essentially, the floor was uneven – perhaps it could be described as wobbly in places – and often the carpet was not tight. It resembled more of a drapery than a tight floor covering. Logically, it’s probably difficult to pull the carpet tight and flat with an uneven floor!. It was difficult and exhausting to push myself and even when another person was assisting it was near impossible to keep my chair in a straight line. It was so bad that I would not be surprised if able-bodied people occasionally tripped or had issues with rolling luggage.

In the bathroom, the drain was not at the lowest part of the shower! Despite using bedsheets and towels to hold the water back, it was difficult and unsafe for me to transfer from my chair in the pond that quickly became the bathroom floor. I’m always in a bad mood after risking my safety for what should be an easy routine task. With that much water the floor stayed wet until housekeeping mopped it up; therefore creating a mess every time I returned to the bathroom to brush my teeth, etc.

Another major issue I had was the shuttle to the mall. Keep in mind, they told me the mall shuttle was accessible before I arrived. I purchased tickets to a show one night from the hotel travel agent; I even made a point of selecting a show closer to the shuttle drop off than the one I initially selected. When I went to board the shuttle there was no wheelchair lift. The driver said I could ask the front desk and they would send a shuttle with a lift. Well, after three hours at the front desk there was still no shuttle. The most annoying part of the entire conversation was when the supervisor told me they “aren’t required to have an accessible shuttle” as if that made up for the fact that they told me it was accessible before I arrived and I would not have purchased show tickets and been excited about the show if I knew I could not take the shuttle. Would a hotel tell you they have a pool and then, when you arrive and wonder where the pool is, state that they “aren’t required” to have a pool? I don’t think so.

Some of my accessibility issues were specific to the conference – for instance, I hate buffets. (TAM had two buffet lunches included in registration and I attended one.) The difficulty of balancing a plate with one hand while pushing with another is bad enough when able-bodied people let you ahead of the line. However, none of the other participants were considerate in this regard – in fact a few people pushed me out of the way as the buffet line resembled a stampede of cattle. Fun. I gave up a quarter of the way through and took a space at the nearest table.

Since I run the Drinking Skeptically in Richmond, I was interested in checking out the Drinking Skeptically event at TAM but that too turned into more of a disappointment. It was essentially held in a bar that I’ll describe as a fenced-in platform. While there was a ramp, the furniture was packed in so tight I couldn’t move once I came up the ramp. I probably made it about three feet before becoming so frustrated and heading back to the room.

There were tons of other issues in the hotel. In general, I felt like wheelchairs, walkers, canes, etc. were an afterthought. Almost like someone went through with a checklist of requirements after construction and ignored how someone with a disability actually lives. For instance, there were large signs indicating the presence of a movie theater but when I arrived there was only an escalator. I later discovered another (significantly smaller) sign for movies on the other side of the hotel where an elevator was in fact located. I did go to a movie and bowling – both of which were highlights of the weekend. Good thing I went on a scavenger hunt for that elevator! It is common practice in such a situation for a venue to have a sign at the dominate entrance to tell people where the elevator is and I think it is downright irresponsible to send those people who have the most difficulties with mobilities searching for a way upstairs!

They did comp one night in the hotel for the inconvenience of the shuttle situation and a $25 dining credit in consideration of spending three hours at the front desk. I did enjoy the meal but I would have preferred to see the show.

When I registered for TAM 8, I was intending to spend 2 weeks in Las Vegas. However, due to extenuating circumstances, the trip was cut to 5 days and that turned out to be a good thing. Although all the talks I did hear were great, when I have to fight so hard just to get ready and down to the conference room, I find it difficult to have a good time. In general, I am the type of person that tries to go out of my way to make things accessible but it really became such a disappointment when I was faced with barriers turn after turn. If only one or two problems had crept up it wouldn’t have been such a problem but it was almost a constant fight… I realize I didn’t even go into the bed being so high I almost injured myself. (EDIT: I’ve been told this line makes it sound as if I was high… I meant the bed was physically high – probably around 30 inches. The ideal – for the disabled – is between 19 and 21 inches.)

I won’t be returning to TAM in the future – at least not if it’s held at South Point.